For all our anal retentive planning, this I was not prepared for…
Requests for when service/memorial might be, or flowers, or donations.

So first of all here is the plan discussed with Jake. Jake is being cremated.

His ashes will be divided into three portions.

One will be taken back to the Czech Republic so that it can be placed with his ancestors and be near his parents who live in Prague.

Another will remain in the US. We are currently working on these plans but are hoping for a place in Auburn, NH as that is the town we were married in and the resting place of my grandparents who loved Jake dearly. Originally, we had thought some kind of scattering but our son, Bas, has requested a stone/urn so he has some place to call his Dad’s.

The last will be returned to Bonaire for a scattering in the sea to occur sometime in the fall; we are thinking October. We will let one and all know when we have definite plans so you can join us at the beach.

And a slight variation on Jake’s wishes, we are making up small pocket stones with his name on them to be left at various destinations around the world, so that Jake can continue to travel with us. He started a list with the children during his last hospital stay.

The kids and I will likely remain in the US for the summer and return to Bonaire in the late summer/early fall. We have no definite dates but plan on taking our time and spending some of the tough special days ahead like birthdays, Father’s Day and our anniversary close to the support of family.

Anybody that wants to contact us, our home in the US is:
73 Derry Road
Chester, NH 03036
or of course, you can email me at linda@lindarichter.com

Donations can be made in Jake’s name to any number of places. Here are a few suggestions that quickly come to mind.

Support Bonaire, Inc.www.SupportBonaire.org
Near and dear to our hearts, we started this US charity to fund various non-profit organizations on Bonaire.

Massachusetts General Hospital – Melanoma Centerhttp://www.massgeneral.org/give/howtohelp/#outrightMost of Jake’s care was under the direction of Dr. Keith Flaherty at MGH in the Melanoma Center. I cannot say enough good things about all the people that helped and cared for all of us at MGH, Concord Hospital, and NCI in Bethesda. If I started naming names, I would forget someone and feel badly about it. MGH has many clinical trials and researchers working to find a cure.

One of the counselors here suggested we write down some of the stories Jake’s visitors have been sharing. I smiled and showed her this blog, … told her bout BT, …and the crew on Facebook, … and not to be forgotten – the dozens of people that have contacted me privately. Add to that the notebook, Krystyana and I picked up the first day we arrived at the hospice which we ask each guest to sign and date, and words to share with us but only if they feel up to it. I can’t imagine there will be too few Jake stories :-)

My parents vistied again last night. My mom said “I can’t believe how many have left messages on the blog – so many people.” My mom has always grinned at Jake and called him her favorite son-in-law (her only one). Jake would laugh back and hug his favorite mother-in-law. Being smaller than me (and my dad not much taller than me) my mom saved all her “tall jobs” for Jake.

A brief story from only a few days ago, I was sitting by Jake’s bed side, just holding his hand and looking out into the garden. A deer walked by, oh about 20 feet away. She paused, scampered around the corner and paused again where I could see her through another window, and then off she went. This morning I strolled through the garden with a hot mug of coffee in my hand. I stopped to lift a peony to my nose and inhaled deeply. This is a good place to find peace.

Only a short note today, the hospice was a good move. We all slept better knowing Jake was there and being well taken care of. And most important, Jake slept better.

Friends have started dropping by for short visits and long. Jake, my social butterfly, my cruise director of life, brightened up and enjoyed himself immensely catching up with all, drinking a toast, sharing a meal, and even enjoying music and song. I think a total of eight visitors today. We bought Jake a guest book to remember these moments.

Although Jake has not been reading all the blog comments or Facebook posts, I have been sharing with him all the people’s names and shown him the photos from the past. We had the smiling weepies a dozen times but that is all good. Jake is feeling the love and so are the kids and I. Thank you for the reminders of so many amazingly great times we have had together.

We moved Jake as planned this morning at 11am. The hospice coordinator worked some magic and our insurance coverage was cleared in just a couple hours.

Jake is at:

Community Hospice House

210 Naticook Rd

Merrimack, NH 03054

room 109, Please do not call Jake on the phone as this is stressful for him to answer it. Family or those visiting can call the main number and speak with the staff 603-595-5688.

Many people have asked what they could bring or send us. Jake still loves his food but just much less of it in terms of volume. Another thing Jake had hopes do was starting something he called 10 Days Left. It is not about dying but about what would you share with the world ,your family, etc if you knew that was all the time in the world you had left. I hope I have phrased it right. He wanted to know the important lesson of life, things that have made a huge impact but might have seemed unimportant at the time. We’ve had a lot of these discussions lately and maybe when I’m less weepy I can share some with you all. Needless to say , we’ve had little regrets about all our traveling and eating adventures :-)

Jake is adjusting to the hospice well. I got to overnight with Jake Saturday night which gave us private time together . We’ve had lots of visitors and Jake keeps us hopping for various foods like Mexican, Brazilian and Sushi. Jake is doing better than I am in remembering the details of everyone’s lives. :-) And we have had several friends visit that go back almost 30 years, pretty impressive.

On Sunday, they started Jake on a new medicine to help him with word confusion/frustration – trying to find the right word. Although drowsiness is not a side effect, it seems to help patients relax so the first couple days they are sleepy and are able to catch up on some much needed sleep.

We are taking a leisurely morning (Jake is napping) as we are expecting an energetic visit from our niece and nephew today.

I delayed posting this blog entry as we tried to reach family members with the news.

As I mentioned in my previous post, Jake suffered three serious seizures in the course of an hour on Monday. The EMTs were able to administer medication to ease the third seizure as they already had him in the ambulance when it started. We are thankful for that.

But these seizures are a sign of the future and that future will be short. We met with a Palliative Care professional from the Elliott Hospital yesterday afternoon. We talked about what the situation is and our expectations. Jake asked the tough question – how long? The answer – days to weeks, not months.

We voiced our desire to have Jake with us at home as long as possible. The kind Lisa gently explained about the seizures getting worse and more frequent as time moved on. Although we could have VNA and Hospice care in our home, it would not be 24/7. When Jake suffers his next seizure, it would take precious time to get the medicine necessary to ease the seizures effects. If we place Jake in a live-in Hospice situation, the medical staff there would be able to address his needs immediately. As one of four family members who witnessed those seizures, I cannot convey how terrifying they were. And add to that Jake was conscious of what was happening to him and his terror was evident. The decision has been made to find a bed for Jake in one of the three NH hospice units. Our house in Chester seems to be smack dab in between them all. We are hoping for the one in Concord, NH as my family lives nearby and that would help during this time.

Now for a little good news, Jake is not in pain and has not required any pain medication. So while he is tired and weak, his humor still shines through. Yesterday, Jake had a Five Guys burger and fries for lunch which impressed the staff. Last night when it came time to order from the hospital menu, Jake said “If this is one of my last meals, I’m not going to eat hospital food!” On request, we got him Haddock Fish and Chip, fried scallops and shrimp with lots of tarter sauce from The Weathervane. Following this thought, I got a Lazyman’s Lobster to make sure Jake’s last lobster wasn’t that icky fried stuff we had on Sunday. For dessert, another trip out for soft-serve chocolate and vanilla twist ice cream. This morning we are slow cooking baby-back ribs for his lunch.

Jake has also started a travel list with the kids of all the places he wants us to visit for him. Of course, the polar bears top the list, although more than a couple dozen places and sites have been discussed.

At this point, Jake is okay to have visitors as long as the visits are relatively short. While he is at Elliott, the visiting hours are 12noon-8pm – more info at www.elliothospital.org We don’t have a time frame for the move to the hospice. Please let me know if you plan to visit so I can keep you updated should anything change.

11am update
We just heard that Jake definitely qualifies for in-house hospice care but currently there are no beds available in Concord, NH. We are looking further afield in Merrimack and Dover.

Today was a tough day. After a nice lunch with Jake’s brother, Dave, Jake started experiencing strong seizures. We called 911 for an EMT/ambulance. Thank you Derry Fire Department for being so kind, fast, and professional. And thanks to Dave for driving the kids and I to the hospital. Thanks to my mom for driving Dave back to his car and taking the kids home, plus coming back to the ER to wait with Jake and I until his room was ready.

We spent most of the rest of the day in the ER waiting on test results. We are thankful – no more seizures at this point. They have started Jake on a new medication aimed at preventing more. Jake and I will be meeting up with various doctors tomorrow as the CT scan did not reveal anything new that may have caused these seizures.

Jake was groggy due to the medications, but demanded a meal in the ER so that is a positive sign. He also ran through his list of the things I should bring him like his special warm duvet comforter and such. At this point, I don’t know how long Jake will be in the hospital.

I apologize in advance to family as this may be the first time you hear about this especially if David has not been able to contact you yet. I just need to write this entry now before tomorrow when I will likely be spending most of my day in the hospital speaking with the doctors.

On Monday, I sent this email message out to family but I never got a chance to blog and let the rest of our friends know what was happening. See below.

“I just wanted to let you all know that Jake is currently having eating problems again which has quickly led to unsteadiness and weakness due to his already weakened state. I have been in contact with his doctors and they have doubled his steroid dose as of today in the hopes of jump starting his eating once again. The second dose begins tonight so it is a matter of wait and see for the next few days. Hopefully, we can keep him out of the hospital this time.

Because of this, we have cancelled our trip to the mid-West which was scheduled to begin tomorrow. Right now I’m trying to cancel all the reservations and contact all the people that might be expecting to see us.”

Tuesday Update
Well, with just the first of the extra medicine last night, Jake is already eating better and more steady on his feet today. We don’t know how long Jake might be on the extra medication but we are in constant contact with his doctor who is monitoring his progress.

As you may know from the last blog entry, Jake’s daily intake of steriods was
reduced at his last doctor’s appointment. We had been warned that it might cause
some weakness and we should keep in touch with the doctor with any symptoms that
might develop. Jake has recently been feeling weaker and uncoordinated so we
contacted Dr. Flaherty today to see about raising Jake’s steriod level back up to
relieve the symptoms and get Jake moving better. The doctor readily agreed that
raising the steriods back up would be a good idea. It will likely take a couple days
to see some improvements.

Jake had tried acupuncture before and found some relief from cancer treatment side
effects but we had problems locating another practitioner in Boston when his moved
away. Now that we are in Chester, Linda found an acupuncturist in nearby Hampstead.
Jake has had a couple treatments so far and is looking forward to more at the
Merrimack Valley Acupuncture. Jake has also had some reflexology massages at spa as
well as nightly leg massages from Linda to get some relief from lymphademia in his
right leg (a side effect from lymphadectomy surgery a year ago).

Our Softub spa is finally up and running with the last part, the bench surround,
arriving today. We still have not convinced Bas to give it a try, although the rest
of us have had a dip or two.

As promised, Jake has increased his daily PT in preparation for traveling. Krystyana
and Linda take turns running him through his exercises 2-3 times per day. Our travel
plans take us to Minneapolis, Indianapolis (and Columbus), and ending in Cincinnati
during the second half of May.

Our move to Chester went quite smoothly and we send many thanks to those who helped.

Although we were filled with relief that the move was over and we had most furniture in its proper place, it was not to last because we soon found out that water was leaking in the basement from the septic system…at 10pm on a Saturday. We had to skip showers that night and there was much anguish over that, mostly from me. I was the lucky gal attempting to take the first shower when our houseguests hollered up about a lovely water feature they had found in the basement. Needless to say, the first order of business the next day was to find a plumber working on a Sunday. The plumber fixed the problem temporarily but told us we had to replace the septic outflow pipes and we were not allowed to flush any toilet paper or wipes until that was resolved. We had to wait a week and get quotes from plumbers to fix the various plumbing issues. It was decided by my mom that my dad would probably prefer being away from the house during the septic replacement as it would take a few days and possibly be loud and smelly. And so we stayed at a hotel for two nights with my dad in a room with a Jacuzzi tub and gas fireplace in it. Dad turtled in the tub and we had to call in Bas to help get him out of it. Thankfully, the whirlpool in the pool room worked out better and Dad could get in and out under his own power. Another issue that sprung up midweek was that our oven was not working properly, while in the attempt of cooking meat within it. And we are still working on getting a motor for the soft tub my parents ordered because the delivery people showed up with the correct sized tub but incorrect size motor.

Despite all that, my mom and I have unpacked and organized quite an impressive amount while installing various fixtures.

My dad had his PET/CT scans on April 18th in Chelsea and his doctor’s appointment was April 23rd in Boston. His doctor said tumor growth was on going but seeing my dad, he felt very positive about my dad’s progress. The doctor also had the amount of daily steroids reduced. My dad is doing a lot better in terms of his energy, speech, and reactions, from my point of view. He is eating more and making an effort to do so as well as making an effort to go out and exercise.

His next scans and doctors’ appointment will be in mid June and if his doctor clears him, we will be going to see the Arctic this summer to see the polar bears.

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About

This blog started as a place to explore the pursuit of parallel, varied interests in the vein of a Renaissance person in light of society's demand for specialization, but my diagnosis of cancer - malignant melanoma - in March 2011, has changed all that.

For now, this blog will deal with an exploration of how cancer affects one's life and perspectives, as well as share the voyage through diagnosis and treatment, hopefully with a positive outcome somewhere down the road.